PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

[Firefighter58]

Just got a quote for batteries for my wheelchair, $1000.00,

 

[EricInLA]

GreenCat, what a descriptive and soothing post. Spain sounds wonderful - I was there in my youth. I remember thinking how strange that the most painting there (Picasso's Guernica) was not at the Prado, but rather at some other smaller museum. Asheville also sounds nice. . . . I've never been, but I've seen pictures - usually involving that big mansion you have there - and it always looks idyllic.

Kevin - may the next two weeks be better than the last two! You will get this surgery taken care of soon enough, and then you will be able to better enjoy the summer without that anxiety.

Is anyone attending any of the Lou Gehrig celebrations at the MLB ballparks tomorrow or Friday? I am going to Dodger Stadium tomorrow with a group of fellow ALS warriors. I think it will be good to raise awareness. I heard Brian Wallach will be throwing out the first pitch in Chicago tomorrow. How cool is that??

 

[wmilo]

Greetings, all.

Kevin, I take an Allegra (fexofenadine) daily, and have some success with Flonase nasal spray for breakthrough nose-dripping. Sorry to hear about Lily. Always hard.

My wife got an album with prompts about favorite vacations, early school experiences, etc. I can't write anymore, but I am dictating responses into the computer.

Best to all.

 

[KevinM]

Thanks Bill. I will give the Allegra a try. And thanks for the kind words about Lily.

That album sounds fantastic. What is the name of it?

 

[NekoiStar]

So my week's been fun so far.

I've decided to not move in with my dad, as my uncle, who lives in the same home, recently returned to drinking and had demonstrated quite clearly that he does not respect my physical boundaries, my condition, or my decision on my gender/transition (walked up to me, punched me in the shoulder, called me "Josh" and refused to correct himself after I told him I was Joanna). I have a lot of past trauma with alcoholics and my uncle is one of those people who perpetuated it when I was younger. I can't feel safe in a home where he, at any time, can start drinking and make me feel unsafe and unwelcome. He doesn't work (On SSDI) and I would be home with him, alone, all day while my dad was working and I feel frightened by that concept. My dad also started to ask me to pay more and more to live there, despite me telling him that I'm not working anymore, and even with short-term disability and SSDI funds will be tight as ALS can be quite expensive and neither have yet to be approved and I'm just floating on my savings right now. Ultimately, I feel like I was being looked at as a source of economy for the home... not a daughter/niece with a terminal illness needing a parent to lean on.

Good news, when I talked to my Brother, and his wife, with which I am currently living, stood right up and said they would keep me there as originally planned and are stepping up in their support and understanding. They're gonna come with me to my next ALS clinic and are working with me step by step as this progresses. No one drinks, smokes, or does drugs in this home, it's a safe place and yes, while there may be 5 kids going to school, I would rather take my chances of getting sick, than living daily in fear of my own physical wellbeing. I have my own room, so if folks start to get sick, I can Isolate myself, and if I get sick, I know my family here will take care of me and get me to the hospital if needed. Besides, with my dad working his job and my uncle running around bars, I don't think I would be any safer from illness with them either.

So, good news, and bad news altogether, but progress is being made!

 

[KimT]

Joanna, I think you dodged a bullet by not moving in with your father and uncle. Five kids will make your home lively and I think that's important as we progress. Your brother and his wife sound like good people.
I don't have kids and I'm divorced so my best friend and I bought a condo together about a year after I was diagnosed. We were once a couple so moving in together wasn't without problems but, for the most part, things have been good. We each have our room and bathroom and made the third bedroom into a shared office. My housemate is bonded with my dog so that's a good thing, too.

I'm glad things are getting settled for you. It's always so hard in the very beginning. The diagnosis is bad enough but when you add in all the thing that must be considered, it feels overwhelming.

 

[wmilo]

Kevin, the book is called The Heirloom Memories Book, published by Dayspring. It is in the form of a photo album where the covers can be removed to add additional pages.

 

[KevinM]

Thanks, Bill. I’ll look into it. Sounds like a wonderful way to capture special moments.

 

[gnat]

Hugs Joanna, that sounds really tough for you but much better to make the decision now than move in and regret it. I'm currently doing a big 7 week trip while mobile and loving it (diagnosed 1 March 2022). As if MND is not complex enough, I'm also type 1 diabetic on insulin which means I have to think a lot about food, blood glucose, insulin dosing and possibility or actuality of hypos. Hypos start with shaky legs - so I missed them a few times blaming MND. 3 weeks post-diagnosis my high thyroid came back - causes fast heart rate, shakiness, feeling hot and breathlessness. And in the last couple of weeks menopause hit as well - causing hot flushes. Two nights ago I had 1 wake up with my blood glucose alarm falsely telling me I was having a low. Back to sleep then muscle cramps from MND woke me. Back to sleep once more before I woke with a hot flush. All that hard work of great diet, regular exercise, weight control all a bit of a waste. I do have a question. I do lots of computer work for my job and before I left on holiday I worked really long hours which was a bit tough for my hands. My voice still is fine, wondering what others have done with moving to voice recognition, and if there is anything to do to keep hands going a bit longer. Any advice appreciated.

 

[KimT]

Hi gnat,

I'm so glad to hear you're planning a big trip despite your health issues. Good for you.

I've gone back and forth about overuse of my hands since I'm on the computer a lot and use my hands a lot just in the course of a day. I decided I'm going to do what I feel like doing and only stop if my hands cramp up or feel extra tired. So far this has worked for me.

I was over menopause before this beast hit but Remeron worked wonders for me. I really had no symptoms once I started on it. It was prescribed for depression but helped sleep, took away hot flashes, and helped me gain weight since I was so skinny.

Do take care of your general health. I always recommend other people with MND get all dental work needed early so there's no surprises down the road. I ended up getting cataract surgery even though I didn't have cataracts since I wore progressive lenses and was a good candidate for Panoptix. Now I can see 20/20 and will never need glasses again. By the way, one of the reasons I decided on Panoptix was I was at a demonstration of eye gaze software and it wouldn't work with my progressive lens glasses.

The earlier you voice bank, the better and easier it will be.

Again, enjoy the trip.

 

[KevinM]

Hi all. Just wanted to check in on this brutally hot day that promises to get worse for at least another week. Records are being broken all over. And it’s not officially summer yet.

As always, would love to hear from anyone still able to or interested in posting.

 

[Firefighter58]

Hi folks, it's not too hot here, but thunder storms yesterday and predicted for today. Right now it bright and sunny, but very windy, we will see if the rains come or not.
Al

 

[Statius@]

I've been putting off checking back in since our return from Tucson in late May. It was a long and tiring trip, made more so when my footrest assembly on the PWC came completely loose--it fell off. My daughter and DIL were able to tape it on (several times) but I couldn't put any real pressure on it. VA arranged for it to be fixed shortly after our return. Nice weather when we got here, but now it's gotten hot and humid. Our dog has gotten used to the freedom of our acreage and hasn't run off. More later.

Ed

 

[gnat]

Hallo aus Deutschland (hi from Germany). I've ventured to the other side of the world to New Zealand after diagnosis in March, while my mobility is still good. Managing pretty well, although a few little challenges from time to time including getting menopause in the middle of the trip (of course!!). Saw a professor in Germany who is all over MND and very research active, to ask all his latest thoughts. Well worthwhile. My take home messages were: get genetic testing (and medication if applicable depending on the genes), moderate exercise, riluzole, high fat diet may be useful, do not lose weight if possible. After our discussion and when I return home I plan to return to a ketogenic diet which may have helped my slow progression to date. Was on it for type 1 diabetes, was a positive study years ago in mice. Helps the diabetes and might possibly have a benefit in MND so why not. Also spoke about whether or not to have a repeat colonoscopy with a bowel issue, and whether I should or should not be on a statin and edaravone, which I found useful. Nice to be able to tap into a great brain on this.

 

[KevinM]

Guten Abend, Gnat, from very hot Florida. As an aside, I was born in Heidelberg in the 1950’s. My father was career military stationed there. A beautiful college town that I went back and visited in my twenties.

Like so many I’ve dreamed of visiting New Zealand, and I hope your trip is full of adventure and fun.

That also sounds like very sound advice from an expert.